Part 1

It looks like I haven't written in a year, but I have.

I've started so many posts, but stopped, deleted, saved to drafts. There's just always so much. Always too much. Years of medical jargon and situations that my peers, understandably, cannot wrap their heads around. My reality is unreal. It can be lonely. Some days I handle it better than others.

For starters, in my short periods of remission, physically, I find a new normal. I try to be grateful. I chastise myself when I'm not. I should be happy! Be here now! I'm still alive! APPRECIATE IT, DAMNIT! Tick tock! Mentally, emotionally, I'm a wreck. Going from an active fight to a passive wait for the next lymph node to pop up. With less appointments in Kansas City, I was able to schedule myself with a therapist for a while, who helped me understand that I am dealing with generalized anxiety disorder and, initially surprising to me, PTSD.  It clicked. The repeated trauma of treatment. The looming threat of death, ever backing away, then moving closer, then back again. Learning these things about myself has helped me cope, and of course, I'm still learning.

Let's see. The last relapse? I knew. The same setting. Sitting on the couch, my hand abscently touching my neck, I feel a hard little pea. I wait and watch. No descernable change in size over a month. But then the familiar itching in my palms starts, and then the scan comes, the biopsy confirms, and it's back to our shortening list of options.

This time? I relatively new immunotherapy called Nivolumab. It essentially ramps up your immune system to an insane degree to identify the "checkpoints" at the cancer cells it was allowing to slip by. Seek and destroy. However, since I have a donor immune system from my Allogenic transplant, the biggest risk with this was that while my immune system would attack the tumors ferociously, (Graft vs Tumor effect) there was a distinct possibility that it would also attack my own body, known as Graft vs Host Disease. Any guesses as to my luck? We'll get to that.

Rewind. The eve of my 30th birthday, I took my first abulance ride. Inpatient at KU Med, wracked by alternating drenching fevers and body shaking chills, I was diagnosed with pneumonia and two viruses. I was down to 99 pounds. Initially tachycardic and septic. It was absolutely terrible, but in the words of Monty Python, "I got better!" Ah, remission was bittersweet.

Pneumonia again around Christmas this year, after my relapse and one Nivolumab treatment. The CT scan of my chest that confirmed pneumonia seemed to confirm sonething else. The tumors were smaller. The Nivolumab seemed to have a positive response! I'll take it.

Enter Graft vs Host Disease. (GVHD)

I was inpatient again a few weeks ago, over New Year's. My liver enzymes were climbing up, concerning, then alarming. The highest threshold for normal liver enzymes is around 50. I spiked to 1100.

High dose steroids. Hell. Its hard to explain, but my mind is not my own on them. Detached, unable to think deeply or concentrate, read (or write) for very long. I barely sleep. I'm not myself. But I dont have the luxury of control. I swallow my pills. I take my injections with a smile. I become a witness to myself. I hold it together because this is my life. I will take it to the alternative.

A liver biopsy confirmed GVHD of my liver. I began 4 more medications to combat the damage, watching everyday for the liver numbers to drop. Slowly, slowly, they do. They still are. We got down into the 300s yeterday. Still scary. But better. I'll take it.

A fifth therapy has been introduced. Photopheresis. Three days a week, at KU Med, I sit for three hours. my blood is extracted, centerfuged, and treated with a drug that makes it sensitive to UV light. Then it's blasted with said UV light and pushed back into me. This kills off T-cells, in the hopes of calming the severity of the reaction of my immune system. Usually, it would be through a large gauge tube through my port, but my port is being uncooperative at the moment. So it's a 17 gauge needle in the arm, until we figure things out. I'm hoping my veins hold can hold on. This therapy is long term, results, if any can take months. It's time consuming, but not toxic, with very manageable side effects. Seriously, though, sience is so neat. Also, the nurses here? The best. That makes all the difference.



You know, I don't feel the needles anymore. Even as the size goes up. Is it the skill of the  incredibly specialized nursing staff? Have I become desensitized? Compared to the pain I've endured in the last few months, it seems plausible. I feel like Im just a bystander. It's another feeling. It's something I'm watching happen to someone.



To be continued, promise.

Resolution

of all previous metabolic activity. No new metabolically active lymph nodes identified.

Remission is how my doctor put it.

The best news I never expected.

Scan Day

Today is scan day: the day that comes every three months when I find out how much my cancer has grown or not grown.

I know its always there. My silent partner. Til death do us part. I just hope it isn't spreading too much. Or at all. Halted, perhaps.

I think my expectations have become healthily realistic.

Here goes.

1/2/16

I've been spending my time working on my marriage and focusing on my little family. You would think that Brandon and I never had a chance; falling in love while I got a transplant, getting pregnant two months after, pregnancy, marriage, childbirth, a newborn, a toddler, a relapse/remission, relapse/remission/relapse... Still no time to work on us. To figure out how we fit together. But there was always love. So we made it. We are making it. We're working as hard as ever. I'm focusing on my husband, who has seen my every worst moment, my darkest places, and loved me anyway. I'm focusing on my son, because he has seen me shake in pain and cry in self-pity and he always wipes away my tears. Too young for any of this, but always there to put me back together when I fall apart. I don't hide things from him. Because I don't want him to hide his feelings. I think of what I want to leave him with, when I go. Healthy attitudes about expressing emotions, holding courage, kindness and love above all, knowing how he feels is valid- to examine it and let it pass. To allow himself to feel anger and sadness and then to breathe them out when it's time.

When you begin to see that you won't get the long life you expected, you realize that your time is more precious than anything in the world. I know it's cliche, and the English major still deep within me winces, but it's true. Every hour that ticks away at work or at a doctor's appointment is time taken from more important things. The most important things.

So I'm focusing. I'm focusing so closely that all I see are my husband and child. All I see are clocks ticking. All I see is the love that I have to give in the time I am given to give it.

Time flies when you're sick for months on end

Hi, internet.

So, let's see, where did we leave off? Mid October? Shortly after my last post I was diagnosed with parainfluenza. A few weeks of green phlegm, terrible coughing, and a couple days of voice loss and things seemed to get better for almost a week. Then I woke up hacking up green again, and slowly slid into fevers, chills and fatigue.

I was still sick when my husband, with the help of a friend and our families, moved us into a new home in town, closer to work, closer to friends/family, closer to hospitals. I was feverish and barely able to stand. My husband continued, over the next few days, to single handedly move the rest of our boxes and unpack necessities. While taking care of our son and me. Last Thursday, the usual coughing and fatigue changed into something new: chest pain, shortness of breath, dizzy, barely able to stand or walk. I called into work and went to the BMT clinic the next morning, where I was diagnosed with pneumonia.

I know, the fun just doesn't stop with me right!? Ha! Anyhoo.

Brandon put me to bed, tucking new towels under me to catch the sweat and took care of our son so I could stay bedridden for days. He hugged me, kissed me, told me it would get better. Thanked me for being strong.

My mother hooked her arm in mine to help me weakly walk from waiting room to exam room, from exam room to CT scan. She drove me to and from the appointment, and waited with me for 6 hours in stiff chairs for answers and medications.

But I am happy to report that the antibiotics really seem to be doing the trick! I feel better every day. I am still fatigued and weak, but its hard to tell how much of that is the chemo.

Oh, the "new" chemo! Long story short, its two different pills, taken together. Pretty nice not to have to get infusions or lose all my hair, though the nausea and fatigue is pretty brutal. I'm down to the lowest weight of my adult life: a much-too-thin 118 lbs. But I'm eating as much as I can and drinking Ensure when I can't, so hopefully that number will go up soon.

So this is my life for now. Things have been so difficult, but I'm seeing a light at the top of the hole again. The hole doesn't seem so deep, now.

Oh, and I took three classes this semester. I had to get an extension on one of my term papers, but it looks like all As and Bs otherwise.

Sometimes I fear that so much sickness is growing a cynic within me. That it's making me harden. I try to remember:

"Be soft. Do not let the world make you hard. Do not let pain make you hate. Do not let the bitterness steal your sweetness. Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place."

Love keeps me afloat.

A short one

I'm having a hard day. What my friend and I have come to call a "bad anxiety day." When there is a whirlpool of suffocating thoughts in your head that spin round and round, showing themselves again and again but never disappearing.

So, let's see. I relapsed in May. I underwent one treatment of Brentuximab (immunotherapy), tried for a second one, had a near-anaphalactic allergic reaction, tried again with premeds, got a second dose of Brent in, had a great response (all that pain was a good sign!) and a "normal" PET scan, tried for a third treatment, had near-anaphalactic reaction despite premeds, the pharmacist and doctor decided I was building up a sensitivity to the med, and decided to call it good. A little less than three months later, I had a night two weeks ago where I couldn't breathe. A Saturday spent at KU Med, blood work, CT scan, virus panel, nothing taken away from the whole damn thing but a shrug, a guess of asthma, and what looked like a slightly enlarged lymph node in my neck. Fast forward 2 days, PET scan. It showed some progression of disease in my neck and left arm pit. I already knew, so it isn't a big surprise. I know my body now, I know the signs, I know before they do these days. I've been on this road for so long. The big surprise is that it isn't a large amount of activity. It hasn't spread very far yet.

So now I wait. I wait until Friday, I wait for 6 more days. 6 days that stretch on in anxiety and circling thoughts. I wait to plan my life around treatment. Can I work? Maybe. It depends on if we try Brentuximab one more time. If we go down that road, it will be inpatient an KU Med, involving a huge dose of Benadryl (which makes me slide drunkenly in and out of consciousness) and constant monitoring to make sure I can breathe. Or we go back to good ol' fashioned chemo. Gemzar. Bald, sick, so so tired. Either way, I have PTSD at this point when it comes to getting treatment. My mind and body get tense and expect suffocation again.

This is only snippits. Bits and pieces. I'm sorry. But that's all I can do today.

Sometimes, it's all just too much.

Truth

Here's what I did wrong.

When this all started (I don't use the word "journey" anymore; rookie mistake. That word has connotations too beautiful for this terrible disease) I only showed the sides of myself that I thought people should see. People only saw the me that was strong, clear-headed, and optimistic.

But I'm an old woman now. (ha! and proud of it!) And I won't bullshit you any more. It's not fair to anyone reading this that needs to know the truth of this process, who may be going through it, too. I AM an optimist. I CAN be strong. But I have good days and bad days. And days that swing from one to the other hourly.

Some days I cry. I feel debilitating pain. I hobble, I limp. I feel sorry for myself. I mourn the loss of a normal life. I have days when I feel as if I am walking through molasses, days where the fatigue is so bad I struggle to lift my body from the couch. I sit, staring at nothing, tears welling in my eyes, wondering what kind of God would let me feel such love for a child, bring it into this world, want nothing but to watch him grow, and know that will be taken from me. The wrenching in my gut, wondering how I will ever say good bye. I have days where I feel useless and scarred and ugly.

Some days, I feel a breeze on my face and smile. I walk into my appointments laughing and ready for war. I thank my lucky stars to have gotten to live at all, to have slept among the redwoods, to have explored Cambridge, England, to have seen Mickey Hart drum into my soul in the flat nowhere in Idaho. I feel my heart fill and run over with love as my son laughs with squinty eyes and hugs my legs. I smile. I look around me at my amazing and supportive friends and family and feel that I have had an incredible life, and that I have a lot of life left to live. I feel grateful. I feel content.

Here is the important thing I've learned to do with all of this.

I allow myself to feel it all.

I allow myself feel every fabulous high and every dark low and I remind myself that everything I feel and think is valid. That I am grieving a loss. But also that it is unproductive to label an emotion as good or bad. They just are. And once I feel everything I need to feel, I go to sleep knowing that when I wake up, it will be a new day to try again, and I don't hold anything against myself. Every day I do my best, and every day, my best is going to be different.

And then I put one foot in front of the other. I fold another load of laundry, I play Mr. Potato Head with my son, and take it one day at a time.

So this is living with cancer. I promise you honesty.